When the going gets tough

5 questions for Mia Birdsong on showing up for our people in moments of crisis

You’ve met Mia before — a dear friend, writer, facilitator, visionary, beekeeper, and now…cancer survivor. When she got cancer last year, I was really scared. I love her so much. I didn’t want her to die, much less suffer, much less deal with our racist, sexist healthcare system while suffering. So many worries.

But before my worries could carry me away, I was instead mesmerized by how she was flowing. She was instantly arm-in-arm with her people, creating a seemingly spontaneous and interdependent dance of showing up for her and each other. I realized: She did write the book, How We Show Up, of course, so she trained us all for just this moment!

Before long we had specific “teams” going that streamlined the communication for and about her, and a wide network of people who love Mia all knew what they could do to be supportive. And this was all in the context of a global pandemic!

Sadly, I’ve had way too many opportunities to practice what I learned through witnessing and experiencing this coordination of community; I’ve had a bunch of friends with cancer diagnoses in the last year. I’ve been itching to get Mia to articulate some of this more formally so I could pass it on to you all. I hope it’s as useful and healing for you as it has been for me.

Courtney Martin: You were someone who had thought about community and mutual aid a ton before you got your cancer diagnoses. Did you find that you were able to apply all of that knowledge or did your mind kind of go blank when it happened to you? 

Mia Birdsong: One of the things I’m grateful for is that the process of researching and writing a book about community changed me. It changed how I think about my own relationships and collectives. It changed how I show up to those communities and what I spent time and energy cultivating. It changed how I understand my place in the world and my sense of value and accountability. In our culture, with its celebration of “independence” and “self-reliance,” asking for support can feel like having to relinquish something important about how we see ourselves and how others see us. And it kind of is.

We’re relinquishing the idea of being strong and resilient on our own. We’re relinquishing a version of ourselves that chooses suffering over ease. We’re relinquishing being seen as capable of sustaining our lives on our own. And we get to claim something more powerful, more whole, more human. 

The systems and infrastructure that are currently in place are not designed to care for us because they are built around the scaffolding of capitalism. And capitalism is fundamentally concerned with profit. It’s about getting the most out of people and the planet while providing the least. That’s incompatible with ensuring that we all have what we need to live, with having a well society.

But what we do—and really what people have been doing for a long time because for some of us, those systems didn’t even pretend to work—is create our own micro-infrastructure and systems of care and support. We circle up with our people. We recognize the strength and expansiveness of our collective abundance. We get clear about the ways in which privacy from the state or those who might harm us can be protective, but privacy with each other is sometimes just secrecy and self-silencing born of shame. We lean into the fact that no one is coming to save us, but that we are more capable than we thought of saving each other. 

Something about it is hard and messy and incomplete because it’s not like we’re not contending with the realities of capitalism and how it robs us of our time and energy, but we can safeguard pockets of space in which we can tinker and build and experiment and just love each other. And as those spaces get rooted and carve deep grooves of habit, we can carve out a little more space. 

For me, the work I did as I was researching and writing my book and then the ways covid invited me to connect and support in community with others—that was all rooting and carving time for me.

So when I was diagnosed with cancer, there was no other way for me to be in it except with my people. I told my people immediately. Minutes after I received my diagnosis, I was on the phone and sending emails and texts.

And my people, because of what we have built together, immediately came through. I hadn’t even processed anything, and folks were holding space for me to do that as I was sharing the news.

That experience of not waiting to process before telling people and asking for support, was like free falling into the solidity of other people.

They helped me process so I could make meaning of my diagnosis. I think it also allowed people to feel into the kind of help I might need instead of me telling them or them guessing from outside my experience.

So give us some basics. What was the structure that you designed for your care community? 

So first, it’s important to know that I was diagnosed with colon cancer in July of 2021. Covid protocols meant that, with few exceptions, I went to receive my medical care alone. No one could come to my appointments with me, no one could visit me in the hospital after I had surgery, no one could accompany me to get acupuncture or chemo. It also meant that my household—my husband and our two kids—were the only people who could care for me in our home. 

But, like I said, my people came through. My friend Aisha was the first person I told—we had a work phone call like 20 minutes after I got the news from my surgeon. Before we got off the phone, she had the meal train set up. When it came to how I would be cared for, me and my household being fed was basic. Aisha got together with my friends Liz, Akaya, and Mariah, and they became my Care Squad. They created spreadsheets and organized communication. They thought through a lot of what I might need and asked me for input when they needed it. 

For example, I wanted advice. I had never had cancer before and I wanted all the advice, but I didn’t want anyone calling me up telling me to drink my own urine or whatever. I wanted to be able to access the advice when I wanted to. So they made a spreadsheet for that. I got a ton of helpful advice, things I never would have known or thought about. It was important to have that explicit invitation to share advice and a clear way to do it so people knew that yes, I wanted advice and they didn’t have to be careful about overstepping by offering it. And, no, you can’t just call me and tell me what you think I should do.

Of course, having it all written also created a resource. One of the things that happens when you are among the first of your friends to experience something, is when it happens to others, you are the person people go to. So much of what has been created for me or shared with me is written down. That community knowledge, wisdom, and infrastructure can be, and has been, passed on to others.

They also created a Joy Fund for me, which was a pool of money for me to spend on things that would bring me joy (I bought art supplies and romance novels). There were so many other things—my walk squad, an errand squad, and communication leads. There were playlists and streaming recommendations. If I had a request, I could send it to the Care Squad. If I needed an errand run, I contacted the errand squad captain. 

I think that all these avenues for support and contact meant that people felt less tentative and unsure about how to help. I think it also meant that people were less hesitant about reaching out.

So much about an intense physical experience like healing from surgery or taking medicine that makes you feel like shit is just you alone in your body.  But through the five most intense months of medical treatment when I could have felt so unseen or disconnected in the deep ocean of pain and nausea and discomfort, I felt like I had this tether I could pull on that connected me to the people who love me. 

What worked really well and what would you have done differently?

When I reflect back on my experience, the only things I ever feel anger or frustration about are the failings of our social systems. We’ve created so many barriers to care. We continually forsake ourselves. We have thrown so many people under the bus without understanding that we are all connected and it’s just a matter of time before that bus runs us over too.

What do you think we often get wrong about supporting someone through an acute illness, like a cancer diagnosis? 

Part of what I got a glimpse into, but I know was much deeper and more intricate than I was aware of, was how my system of support was supporting itself. I think what works in supporting people through hard things—break ups, death of loved ones, illness, loss and grief that we will all experience at some point—is that the support people are supporting each other. So much of the strength of my support system was in the places where people were in community with each other. They were checking in on each other, they were processing what was painful and hard for them about me having cancer, they were sharing the ways it activated their own fear of mortality or memories of loss, they were asking each other questions and exchanging information. That weaving of love and care around me, but also into and under itself, is beautiful and profound. It also made the support I was provided with that much more robust and resilient and sustaining. 

What are you finding big pleasure in these days as you enjoy your strong, resilient body?  

I’m still finding my way back to my body, which has been forever changed by my cancer experience. So I’m surrounding myself with things that feel good and things that allow me to find beauty and pleasure in the present. That’s everything from going on bike rides to buying flowers for myself to sharing jokes. But it’s more about noticing. It’s more about being available to what and who is with me right now.

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So in sum:

• Invest in your community and nourish your friendships all along the way so that when the going inevitably gets tough, you’ve got people to lean on.

• When you get a diagnosis, tell people early. That vulnerable moment is a time to lean on the friendships you’ve been feeding.

• Invite your friends to get in formation—a care squad, an errands squad, or whatever other kind of squad would be most useful to you.

• The key is to lessen your burden to communicate about your diagnosis, your status, your needs. Each squad can have a point person who has been empowered to communicate with your directly, but everyone else can be invited to only expect 2-way communication with the point person (rather than everyone bombarding you and expecting an answer). Bonus: your squads can support you, but also support one another.

• Be explicit! Mia is a master at saying this feels good—advice—and this is the form I want it in—spreadsheet. She is also great at telling people what to expect—i.e. feel free to send me funny memes because they help me get through the long days, but don’t expect a reply. The Joy Fund is also a great example of this; unashamedly own what would feel healing, delightful, sustaining, edifying. Your people will love to show up for you in a way that genuinely feels awesome and it frees them up to ask for what they really need and want when the time is right.

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Follow Mia on Instagram. Your life will be infinitely better. And check out the new organization she is building, Next River.

We will be donating to People’s Kitchen Collective in Mia’s honor. (Remember, if you’re a paid subscriber, you are essentially part of a giving circle that honors the labor of each of our interviewees with a $250 donation of their choice.)